Prepared to Share. Data sharing in end of life care.
Type of research:
Applied research and implementation
Background & Rationale:
Electronic Palliative Care Co-ordination Systems (EPaCCS) have been proposed as a key mechanism for improving coordination of care, enabling patient choice and achieving cost effectiveness in end of life care. EPaCCS are one of the frontline national projects requiring a marked culture change in practices of data sharing and collaboration across care settings. Anecdotal evidence suggests substantial resistance by some GPs to sharing patient records, which contrasts to an assumption on the part of patients that this is already standard practice. Media stories about failures of end of life care, concerns about leakages of information, data protection regulations and a trend towards increased sharing of information are important social contexts.
- To investigate the impact of “Prepared to Share” on quality of end of life care as measured by patients dying in their preferred place, use of unscheduled care and hospital admissions at the end of life
- To investigate the attitudes of a range of stakeholders (patients, lay carers, GPs, Community nurses, hospital doctors, ambulance service staff, GP practice managers, commissioners, etc.) to the changes in data sharing practices
- To investigate whether resistance / endorsement of new data sharing practices are more characteristic in some groups of stakeholders
- To investigate the extent to which the social context shapes stakeholders’ attitudes to the data sharing involved in “Prepared to Share”
- To investigate how the boundaries between the personal / private and the social / public are re-negotiated in the context of existing and emerging IT tools and at critical time points of life such as the end of life.
Semi-structured interviews, online surveys, analysis of documents and routine data and theoretical analysis. Participants included: patients, lay carers, health professionals and decision makers.
Key findings and outputs:
The study found that the main challenges faced by EPaCCS included: scope of projects; unrealistic expectations set by existing guidance; the discrepancy between IT realities in healthcare and our broader lives; information governance; and “death register” associations.Main drivers supporting EPaCCS were: robust concept; striking outcomes; national support and strong clinical leadership; clinician commitment; education; and funding.The equity and autonomy in patient decision making about data sharing may not be consistently upheld. There were also strong associations (survey findings) between characteristics of General Practitioners and Practice Managers and their organisations and the reported frequency of discussions with patients and their responses.
Findings from the study have been included in Cambridgeshire and Peterborough CCG’s Quality and Engagement Framework for 2018 / 2019, which will lead to all 102 practices engaging with the data sharing template and business intelligence dashboards developed by the study; and the identification of a GP clinical lead for End of Life Care who will be required to attend an annual study day on Palliative and End of Life Care.
BITE sized summary and publication:
- BITE: Data Sharing
- Petrova M, Barclay M, Barclay SS and Barclay SIG. Between “the best way to deliver patient care” and “chaos and low clinical value”: General Practitioners and Practice Managers’ views on data sharing. Int J Med Inform. 2017 Aug;104:74-83. doi: 10.1016/j.ijmedinf.2017.05.009. Epub 2017 May 17. (PDF)
For further information on this project, contact Dr Stephen Barclay at email@example.com